Was anyone else diagnosed with glandular fever (epstein barr virus) and fibromyalgia?

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I was diagnosed with infectious mononucleosis at 28 and epstein barr at 30. I am one of the lucky few that has reoccurring glandular fever. Every time I would push myself too hard at work I would get sick and have chronic fatigue. Suffered from heart palpitations and dizziness. Managed it until I was 38 when I had a massive episode so I thought but learned I now had fibromyalgia too due to workplace accident.

Couple weeks ago I had a migraine, vomited, rash, swollen glands, fever, chills, enlarged spleen. So another episode of epstein barr which has also sent me into a fibro flare. Pain is excruciating and so exhausted! I have been treating this with supplements and it has been working but I am struggling to keep up with my routine. Anyone else out there going through this?

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  • Posted

    Yes Kiki I have had Glandular Fever as well as and Ross River Virus. We really have to manage our energy. Stress is debilitating to us as well so managing triggers and our negative emotions is also a must. Don't despair sweetie, you are not alone. You can cope. 

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    • Posted

      Thank you. I'm trying but the muscle weakness is frustrating and exhausting. I had read that glandular fever can remain dormant in your body for life and can flare up causing fatigue. I don't remember having a flare this bad that my spleen swelled to the point of being uncomfortable and so bloated.

      How do you manage when you have a multisystem flare?

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    • Posted

      Morning Kiki; Yes to the fact that the Epstein Barr Virus (a Herpes virus, the same as Chicken Pox/cold sores/ shingles/and Glandular Fever) stays in our system/body for the remainder of our lives.  It can also be there, even without symptoms, as many of us catch the virus without even realizing it; and yes it does enlarge the spleen and sometimes the liver.

      ?Often many children only complain of "sore ears"; but it is not actually the ear that is hurting, but the Mastoid bone behind the ear, and hence goes undetected, until some time later, we come down with something else.....and although the professionals say it "does not cause CFS", I have read that many on this forum have felt similar symptoms , and then progressed onto being diagnosed with CFS and sometimes Fibro.  For myself, I have been exposed to the Herpes Virus MANY times in my life, and it wasn't until 2006, after having major surgery, that I became so lethargic, and all the other symptoms of CFS, that we realized this is what has happened to me, along with having previously had symptoms of Fibro.

      ?Hoping this helps with your question?                   Bron

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    • Posted

      Thank you. Over the years, I had struggled with epstein barr. Cfs was so bad at one point that they had put me on prescription speed but it had an adverse effect and just made me high.

      It has also caused a heart problems and the cardiologist is monitoring it closely.

      But this bloating and pain due to enlarged organs is definitely new. Gained 10 lbs since labor day. My clothes don't fit. Constantly uncomfortable and sore.

      My trigger points and muscle weakness are in full flare. I'm trying my best but my body is fighting itself.

      It's crazy what you said about exposure to the herpes, chicken pox and measles virus. The infectious disease doc had screened me about 2 years ago cause I had a similar flare when my niece had gotten her immunization shots. She just had her booster. It didn't show as active just that I had my immunization but the exposure to someone with the live virus could be my trigger.

      Thanks for the insight. At least I know I'm not alone.

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    • Posted

      Morning Kiki; I too can't really understand the "bloating", as the only time I really experienced this was in the early 2000's.  i went from a 12 to a size 14, and most of that was fluid retention, and I put it down to the medications that I was taking (the main one being Ibobrufen/naprosan etc)....Are you taking some meds that could be doing this?  if you are on meds for your heart condition, this maybe the reason, and if so, there really maybe nothing you can do for this, as these meds are important for you.  Perhaps if you are retaining fluid, your cardiologist may think that a Dieuretic could help drain the excess fluid????              keep in touch to let us know how you go, as am interested.     Bronwink

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    • Posted

      Sorry, I was overseas and travelling quite a bit but just arrived home. Ok, so Usually it is because I have been under a great deal of stress and pushing myself too hard. Then I will get flare ups Kiki. So as I mentioned, we have to be very careful with our physical and emotional energy. Our emotions deplete us if we are very worried or stressed about things. Often it is things we have no control over but we fester over issues. You must have been under a great deal of stress lately sweetie. And yes it seems to lay dormant in our systems until stress brings it out again. Being over tired is a real No No for us Kiki. I have learnt to pace myself. It took me a long time to learn my physical and emotional limitations. You must rest when you feel like that. It is the only way to recoup. Try to learn to be kinder to yourself sweetie. x
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    • Posted

      Hi Bron. I'm going to see if I can get a night appointment with my doc so she can see the bloating. For whatever reason it's worse at night.

      I have been taken ibuprofen along with supplements to deal with the pain. Maybe I just need to alter my doses.

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    • Posted

      Hi Maggie. Hope you had a good trip overseas. After 15 years I had to leave my career. The stress level was extremely high and I was getting sick constantly. My bosses didnt seem to understand. Whenever I would over work myself I would get run down and have symptoms. More of a sinus infection, ear ache, and fatigue.

      I'm trying to get my health under control and figure out what the next chapter of my life is. So I am under stress but believe it ir not, less stress than i was at my job. My doctors used to tell me I was going to have a heart attack or stroke out. My heart and blood pressure have significantly dropped and are now in a very good range.

      But I also think there is something to what Bron said about being exposed to the virus. The last episode and this one where it's full blown coincided with my me niece getting her shots. The infectious disease doc even tested me for all the illnesses that she was inoculated with but i wasn't tested for this or epstein barr until months later. First doc just told me i was depressed.

      I did have high antibodies for measles but it wasn't showing as active. The number was high enough that the board of health called with my lab results to verify that I did not have measles. Epstein barr also came up as having the antibodies not active.but again probably tested too late.

      Right now I'm taking it easy and resting.

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    • Posted

      Yes rest is the key Kiki. I'm sorry you are struggling with this condition sweetie. I think another thing I have learnt over the more than 30 Years with FM and the Epstein Bahr and Ross River dormant in my system; is to not compare myself to anyone else. We tend to look at friends or relatives and think, why can't I be as healthy as them! Why me?! That is only detrimental to us. Accepting your situation is another key to managing it better. Accepting your limitations without comparisons to anyone else, can help you to cope better. Concentrate on what you can do sweetie, and not on what you cannot. You will have better days believe me. I take a few supplements to build up my system. I find for me, medication brings on other side effects that sometime adds to the symptoms I alreay have. Yes there is pain and weakness, but as long as you manage these days, you will eventually have more energy. Taking the bad days with the better days, is acceptance and living within your abilities. It is a learning process sweetie. Never despair.

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    • Posted

      Morning Kiki;  am just wondering "how many Ibobrufen are you taking a day?".....this med really is only an Anti-inflammatory (used for getting rid of an inflammation of a body tissue injury)...hence is not mean't for long-term use (they say 3 weeks max).  I am wondering if you have been taking this long-term, then this could be the reason for the bloating/swelling???

      ?When I first started having problems, my GP put me on these meds, and I would be astounded how quickly my feet swelled, and then started retaining fluid elsewhere (went up a dress-size in over a few months).  Now I only take this medication for a few days at a time (and 1 at a time, maybe twice a day), if I feel my muscles in neck etc start to feel "extra" sore (which then leads to a bad headache/migraine).....so it, for me, is just a "standby" med.    Not used for Fibro pain.   Please let me know what Dr thinks re this?.................Bron

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    • Posted

      I try not to stay on ibuprofen too often. I have been taking tumeric as an anti inflammatory instead. Only when I am in severe pain do I switch over. It could be that I took both the past couple of weeks with everything going on.
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  • Posted

    Yes I have as a child. I am recently dx w fibro.
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    • Posted

      I found out that I was more susceptible to get fibro and other illnesses due to having epstein barr but did not realize that I could go into a full reactive flare. I used to get run down and need rest but not like this. Did your doctors tell you that epstein barr could effect you this way?
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